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Problem with Bladder training for Radiotherapy

User
Posted 12 Jul 2020 at 16:36

Hi All

I've just joined your lovely community. 

I'm currently preparing for my External Beam Radiotherapy treatment but have problem with my Full bladder training. 

I was advised  to drink 500-600 mls then aim to hold after  INITIAL URGE for about 40min.

Even though I'm doing the pelvic floor exercises, .my problem is that

1) after drinking,  it  takes me 50-60min before I feel the INITIAL URGE,

2)  after initial urge,  I hold for about  20 mins only. This has created a concern & worry for me since its short of the required 40+

Please

A)  Has anybody had this experience ?

B)  When I attend my actual treatment,  will I have to wait  50-60 min before I'm called for my treatment to start? 

C)  any other helpful advice please. 

KB2020

 

User
Posted 12 Jul 2020 at 19:58

Hi KB.

I am currently doing radiotherapy. At first I had no problem with waiting 40 minutes before being called for treatment. However last week, my fifth, I started to have problems with holding my urge to go. The radiologist agreed to let me drink just 30 minutes before being called and this has worked so far

After being called it takes between 5 and ten minutes before the actual radio beam is applied, whilst they make sure you are positioned correctly, which puts me close to the 40 minute time.

I would speak to the radiologist about it, I'm sure they will accommodate your needs, good luck

           Bill

User
Posted 12 Jul 2020 at 20:03

Talk to the staff at the hospital they will have dealt with almost every possible scenario. I arrived at the hospital, checked the appointment was on time emptied the bladder then started drinking the three cups of water. I also started drinking a 500ml bottle of water on the way to the hospital. Consistently is as important as volume in the bladder. I wore a pad in case of accidents and the staff did allow me to take a urine bottle into the treatment room just in case,never needed it.

Thanks Chris

 

User
Posted 13 Jul 2020 at 00:04
You might just feel the initial urge rather later than the average patient - perhaps you have great bladder control. I wouldn't worry about it too much.

Hospitals vary hugely in how they manage the appointments but when John had his RT, he drank the water on the way to the hospital, had 3 more cups of water on arrival, waited about 10 minutes and then into the room. He had the 8.30am appointment every day and was usually back in the car & on his way to work before 9am.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jul 2020 at 10:11

I finished my 37 fractions a couple of months ago, the way I got around it was by start stop technique. I would drink, get the urge however if it got to the point where I was ready to burst with 20mins remaining I would go to the loo and let out just enough then stop, that would make me feel a little more comfortable. Within the remaining 20mins your bladder will keep refilling ready for treatment. There is defiantly a knack to it but once mastered it took lots of anxiety out of the prep. I got so good at it I could go 5 mins beforehand and just let out a little to make my bladder the perfect amount for the radiation zap without being desperate for the loo on the table.

hope this helps

 

User
Posted 13 Jul 2020 at 13:28

KB

I used Tena pads and got them free as a result of the incontinence effect from surgery, the pad I used is equivalent to the new Tena 3 pads. If you have a reasonable control of your bladder they will hold around 170 ml of urine. They will struggle to hold a sudden gush of 170 ml.

A cliche I know but we are different, because of other issues I had a supra pubic catheter during SRT so I could drain a little out of the bladder. If I urinated normally, once the flow started I could not stop , my RT was a follow up to surgery so part of my plumbing system was missing.

I think you need a chat with the RT department, I was probably coming out of the RT department within 30 minutes of going in. I often see comments about how lovely the RT staff are.

Depending on the machine you are on you may get scanned every day, so they can see exactly what is happening to your bladder and bowel. 

My thought is that if you keep hydrated the water will pass through quicker. If you are dehydrated the water you drink at the hospital will take longer to get into the bladder.  I am sure you will soon get into a routine 

Thanks Chris

User
Posted 13 Jul 2020 at 16:10
Hi KB:

Good luck with your treatment.

In my conversation (titled Minor Q - Morning or Afternoon) -- still on page 1 as of now, there was some discussion about Bladder fullness and control.

The standard instructions at my center are to drink 500 ml one hour before the session. When I did that for my planning CT session, my bladder was near "maximum size", and they suggested I let out some urine, and redid the planning scans with bladder at a more comfortable size. They suggested I'm well hydrated (and said most men are not well hydrated), so they suggested that for me, I should drink 500 ml 30 minutes before the session, and that has worked well.

Some thoughts:

* their suggestion to drink 2 l per day is to ensure you are well hydrated, so that when you drink before your session, your bladder fills up quickly (rather than be absorbed by the body). Not feeling the initial urge for 50-60 minutes may be because you are not well hydrated. So try to be well hydrated first.

* the staff can advise you how to adjust the routine (like they did for me, suggesting I drink only 30 minutes before).

* the session themselves take no more than 15 minutes, so you won't need to hold for 40 minutes. If you are too full right before your session, you can let some out to be more comfortable.

* the centers using full bladder protocol will scan you before every radiation is applied, and can make minor adjustments to account for different degrees of bladder fullness.

User
Posted 13 Jul 2020 at 16:21
one more thought.

Follow their suggestion to drink 2 l per day to be sure you are well hydrated. On day of, don't avoid drinking. Just drink normally. Empty your bladder just before your pre-session drink, and then drink you 500 ml. This gets the most consistent bladder size (emptying before your final pre-session drink, then drinking).

User
Posted 14 Jul 2020 at 08:32

Originally Posted by: Online Community Member

And get a toilet card it helps 

It does indeed, I needed mine to persuade a Station master, to open a toilet for me at a "Covid" locked railway loo 😄

Show Most Thanked Posts
User
Posted 12 Jul 2020 at 19:58

Hi KB.

I am currently doing radiotherapy. At first I had no problem with waiting 40 minutes before being called for treatment. However last week, my fifth, I started to have problems with holding my urge to go. The radiologist agreed to let me drink just 30 minutes before being called and this has worked so far

After being called it takes between 5 and ten minutes before the actual radio beam is applied, whilst they make sure you are positioned correctly, which puts me close to the 40 minute time.

I would speak to the radiologist about it, I'm sure they will accommodate your needs, good luck

           Bill

User
Posted 12 Jul 2020 at 20:03

Talk to the staff at the hospital they will have dealt with almost every possible scenario. I arrived at the hospital, checked the appointment was on time emptied the bladder then started drinking the three cups of water. I also started drinking a 500ml bottle of water on the way to the hospital. Consistently is as important as volume in the bladder. I wore a pad in case of accidents and the staff did allow me to take a urine bottle into the treatment room just in case,never needed it.

Thanks Chris

 

User
Posted 13 Jul 2020 at 00:04
You might just feel the initial urge rather later than the average patient - perhaps you have great bladder control. I wouldn't worry about it too much.

Hospitals vary hugely in how they manage the appointments but when John had his RT, he drank the water on the way to the hospital, had 3 more cups of water on arrival, waited about 10 minutes and then into the room. He had the 8.30am appointment every day and was usually back in the car & on his way to work before 9am.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jul 2020 at 10:11

I finished my 37 fractions a couple of months ago, the way I got around it was by start stop technique. I would drink, get the urge however if it got to the point where I was ready to burst with 20mins remaining I would go to the loo and let out just enough then stop, that would make me feel a little more comfortable. Within the remaining 20mins your bladder will keep refilling ready for treatment. There is defiantly a knack to it but once mastered it took lots of anxiety out of the prep. I got so good at it I could go 5 mins beforehand and just let out a little to make my bladder the perfect amount for the radiation zap without being desperate for the loo on the table.

hope this helps

 

User
Posted 13 Jul 2020 at 11:51

Hi  Bill, LynEyne, Stalwart9 & Chris

Many thanks indeed for your prompt and informative responses. Its lovely to be here- a family of supporters & encouragers- as we go through these difficult journey.

Chris please

a) which type of pad do you wear ad where can i buy one?

b) Regarding hydration, i have been asked to drink 2 litres daily to be well hydrated before my treatment starts but because of my current holding time problems, i was planning to avoid drinking whenever i go for treatment and just drink the 500ml when i arrive. My thinking is that if i start drinking in the day, then holding time will reduce when i arrive and drink the 500mls.  Have i got it all wrong?   Any opinions please?

KB

 

User
Posted 13 Jul 2020 at 12:12

Hi Stalwart9

Please could you clarify your technique a bit for me?

assuming you are at the hospital ,drank 500ml before your treatment and waiting to be called in, are you saying if you had a strong urge, you will do a "little pee" before going in for the treatment or you will drink more to top up if you had to do a "little pee" before you go in? 

KB

User
Posted 13 Jul 2020 at 13:28

KB

I used Tena pads and got them free as a result of the incontinence effect from surgery, the pad I used is equivalent to the new Tena 3 pads. If you have a reasonable control of your bladder they will hold around 170 ml of urine. They will struggle to hold a sudden gush of 170 ml.

A cliche I know but we are different, because of other issues I had a supra pubic catheter during SRT so I could drain a little out of the bladder. If I urinated normally, once the flow started I could not stop , my RT was a follow up to surgery so part of my plumbing system was missing.

I think you need a chat with the RT department, I was probably coming out of the RT department within 30 minutes of going in. I often see comments about how lovely the RT staff are.

Depending on the machine you are on you may get scanned every day, so they can see exactly what is happening to your bladder and bowel. 

My thought is that if you keep hydrated the water will pass through quicker. If you are dehydrated the water you drink at the hospital will take longer to get into the bladder.  I am sure you will soon get into a routine 

Thanks Chris

User
Posted 13 Jul 2020 at 15:21

Originally Posted by: Online Community Member

I finished my 37 fractions a couple of months ago, the way I got around it was by start stop technique. I would drink, get the urge however if it got to the point where I was ready to burst with 20mins remaining I would go to the loo and let out just enough then stop, that would make me feel a little more comfortable. Within the remaining 20mins your bladder will keep refilling ready for treatment. There is defiantly a knack to it but once mastered it took lots of anxiety out of the prep. I got so good at it I could go 5 mins beforehand and just let out a little to make my bladder the perfect amount for the radiation zap without being desperate for the loo on the table.

hope this helps

 

I did that too, It just about worked for me at Addenbrookes - their timing was not always perfect with previous patients which caused delays. Thankfully, got through it.

User
Posted 13 Jul 2020 at 16:10
Hi KB:

Good luck with your treatment.

In my conversation (titled Minor Q - Morning or Afternoon) -- still on page 1 as of now, there was some discussion about Bladder fullness and control.

The standard instructions at my center are to drink 500 ml one hour before the session. When I did that for my planning CT session, my bladder was near "maximum size", and they suggested I let out some urine, and redid the planning scans with bladder at a more comfortable size. They suggested I'm well hydrated (and said most men are not well hydrated), so they suggested that for me, I should drink 500 ml 30 minutes before the session, and that has worked well.

Some thoughts:

* their suggestion to drink 2 l per day is to ensure you are well hydrated, so that when you drink before your session, your bladder fills up quickly (rather than be absorbed by the body). Not feeling the initial urge for 50-60 minutes may be because you are not well hydrated. So try to be well hydrated first.

* the staff can advise you how to adjust the routine (like they did for me, suggesting I drink only 30 minutes before).

* the session themselves take no more than 15 minutes, so you won't need to hold for 40 minutes. If you are too full right before your session, you can let some out to be more comfortable.

* the centers using full bladder protocol will scan you before every radiation is applied, and can make minor adjustments to account for different degrees of bladder fullness.

User
Posted 13 Jul 2020 at 16:21
one more thought.

Follow their suggestion to drink 2 l per day to be sure you are well hydrated. On day of, don't avoid drinking. Just drink normally. Empty your bladder just before your pre-session drink, and then drink you 500 ml. This gets the most consistent bladder size (emptying before your final pre-session drink, then drinking).

User
Posted 13 Jul 2020 at 19:35
I had 20 fractions , I would empty bladder when I got to unit , then I was told to drink 3 cups of water , over 10 mins? Then had to wait 20mins ? 3 wk it was a case of holding it well but have treatment straight to toilet , plus maybe stopping on way home at doctors surgery to use facility .Best wear jogging pants easy to get on and off and of course boxer shorts , I found bowel movements harder to control than bladder . Only once during my daily walk I failed to hold my water , always have a bottle in car and towel etc .
User
Posted 13 Jul 2020 at 19:36

And get a toilet card it helps 

User
Posted 14 Jul 2020 at 08:32

Originally Posted by: Online Community Member

And get a toilet card it helps 

It does indeed, I needed mine to persuade a Station master, to open a toilet for me at a "Covid" locked railway loo 😄

User
Posted 14 Jul 2020 at 10:59

Originally Posted by: Online Community Member

Hi Stalwart9

Please could you clarify your technique a bit for me?

assuming you are at the hospital ,drank 500ml before your treatment and waiting to be called in, are you saying if you had a strong urge, you will do a "little pee" before going in for the treatment or you will drink more to top up if you had to do a "little pee" before you go in? 

KB

I would hydrate all day with water as your supposed to, then I would drink 500ml maybe more when I got to hospital, I would have up to 2 maybe 3 little pee's before the treatment depending on how behind they were. Once you get the knack of starting your pee and being able to stop it doesn't matter how much water you drink because you can offload whenever. Mentally don't go into the toilet thinking your going to offload everything just think a little to make myself comfortable, if your well hydrated your bladder soon fills up again for the treatment even if you offload a little to much.

  

User
Posted 14 Jul 2020 at 12:18

Hi Janus  Many thanks for your helpful advice.  Much appreciated. 

KB

User
Posted 14 Jul 2020 at 12:43

Dear family,

Many thanks for all your various suggestions,  advice & honestly sharing your experiences.

May the Good Lord bless you all. 

As a result of information gained,  this is my action plan for now:

1) I just today purchased the Propagator Squeezy App  to improve my Pelvic Floor exercises.

2)   I will focus on drinking  the 2l itre a day to improve my hydration in preparation for my planning appointment. 

3) I have also become more aware of the need to aim for a treatment regime which does not just treat the cancer but also  provides a better quality of life after RT treatment. Hence need to work with your health care professionals to minimise collateral damage  to bowel/ bladder.

So areas I wish to explore further before my treatment starts are: 

3a- space oar rectal spacer procedure availability on NHS or private

3b- Re  actual RT treatment  whether

IMRT with Ultrasound imaging for precise location is safer than IMRT with daily CT scan

Please any comments on 3a&  3b would be appreciated. 

KB

 

User
Posted 18 Jul 2020 at 23:51

Hi Bob

Could u please tell me a bit more about the RT treatment at Addenbrookes? 

A)  which type of machine do they use?  eg is it IMRT? 

B)  Also to check the correct position  before each session, do they use CT scan or an Ultrasound? 

KB

 
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